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Dementia Treatment (PE886)
Good morning, everyone, and welcome to the 15th meeting in 2005 of the Public Petitions Committee. As ever, we have a busy agenda. Having received no apologies, we can go straight to the first item.
Thank you, convener. I start by giving apologies on behalf of James McKillop, who is the chairman of the Scottish dementia working group, and Andrew Banks. Both of them had hoped to be here, but for personal reasons they cannot attend.
Good morning to you all. I was diagnosed as suffering from Alzheimer's disease just over five years ago. At present, I am on a medication that I know as Aricept, although it has various names. I heard the convener mention one of them earlier.
Mr Bryers, do you have anything to add?
The Scottish dementia working group accepts that the medications do not work for everyone but it wishes to establish the principle that they should remain available on prescription in Scotland to anyone who might benefit from them for as long as they continue to benefit. We are concerned about the fact that, in at least one health board area, there is already a waiting list of people who want to be prescribed the medications.
I was going to ask you what reason had been given for not providing the drugs, but you mentioned that they are seen to be not cost effective. Have any other reasons been given? Have any alternatives to the drugs been suggested?
As you say, based on the measures that it used, NICE found that the drugs were not cost effective. NICE has acknowledged that there is evidence of their clinical effectiveness for some people with Alzheimer's. The reason why it has not produced a conclusion to its consultation document, which came out in March, is that it wants to give the pharmaceutical companies additional time to produce further evidence about the targeting of the medications. In other words, it is aware that not everyone can benefit, but not enough is known about which people can benefit and which cannot. NICE has postponed its decision until December, although it originally said that it would make it in the early part of the summer. The delays are causing a considerable amount of unease and concern among people who could benefit from the medications.
You said that no alternative had been offered and that no decision would be made until December. Can you name the health board that you were talking about? Do you think that the reason why that health board and, possibly, others are not prescribing the medicines is because they think that the NICE recommendations mean that they will not come on the market?
There are no alternative medications. If the NICE recommendations are approved and adopted by NHS Quality Improvement Scotland, which will make an independent decision on the matter, no medications will be available. That is why we fear that the incentive to undertake an early diagnosis will be much reduced.
Can you name the health board area that you were talking about?
I think that the name is public knowledge. I am happy to name it, although I am not happy for the area's residents: it is Lothian NHS Board. We know that, because the allocation of money for those medications has been exhausted, people in that area who are judged to have the potential to benefit clinically from the medications must wait to be prescribed them.
Good morning. This important petition must be acknowledged. I have much sympathy for the points that you make. As recently as last night, someone told me that, if the drugs were withdrawn from her husband, she would sell her house to fund them, if that was what it took. I do not understand the methodology for assessing that the drugs are not cost effective. Will you explain that to me a little more?
For £2.50—that is the cost of my prescribed Aricept—I have been given my life back, as I said. It has eased the burden on my family—on my two daughters and my son, who are bound to look after me. For that alone, it must be worth keeping the drug on the go.
I presume that significant costs for carers or costs to your family would otherwise be incurred.
I do not want to go down the route of carers. I have not been involved with or needed carers, because of the drug.
The methodology that NICE employed uses quality-adjusted life years—QALYs. The criticisms that Alzheimer's societies, including Alzheimer Scotland, have made of QALYs is that they take into account only the cost to the health service and are an inadequate measure of the improvements in quality of life. They look more at extensions in the span of life rather than at the quality of life. My colleagues in Alzheimer Scotland have produced a technical paper that we would be happy to make available to committee members, should they so wish.
You suggest that NICE does not take an holistic approach to assessing the drugs' benefits and that considering only extended lifespan is too narrow a view.
That is correct.
In my view, it would be unreasonable to withdraw the drugs, certainly before a rigorous assessment has been undertaken.
David Turner said that the drugs do not benefit all. I have two wee questions on that. If someone is given the drugs and does not benefit, do they experience negative effects, or do they simply not progress or do as well as you are doing? Some people must keep away from other drugs—such as Seroxat, Prozac and even aspirin—for reasons that they might find out about in the middle of a course of treatment. Are the authorities being unusually thorough with your medication?
I do not know how thorough organisations have been in assessing the medications. All that I can judge is the results for me. My children are astonished at the change in me in the period that I have been on the drug. I was completely gone. I was not allowed to go out on my own, because I did not know how to get home. Now I can go out and disappear for days and return when I feel like it. I do not have to be chased back up the road. East Kilbride—where I live—is a big place, and it is easy to get lost there, although if I was going to get lost, I would go elsewhere than East Kilbride.
To add to what David Turner has said, I am not aware that there are any serious side effects. The drug that is most commonly used in Scotland by people with Alzheimer's who are on medication—its common name is Aricept—appears to have few side effects. Aricept was introduced in 1997, so we have seven or eight years' experience of it, and the side effects are minimal. The other medications have slightly more side effects but, in my experience, people are withdrawn from those medications at an early stage, before there are any serious consequences for their health.
If the drug can help you find your way in East Kilbride, I think that we should give it out much more widely. [Laughter.] I have been lost in East Kilbride a few times myself.
I have read the papers supporting the petition and I see that NHS Quality Improvement Scotland has indicated that it is unlikely that the final appraisal will be published until spring 2006. In the meantime, has the Scottish medicines consortium expressed any view on the treatments?
Not that I am aware of.
We hope that NICE will reach a conclusion at its meeting in December, but there have already been two delays, so the spring of next year might be a more realistic estimate. The responses that we have received, both from NHS Quality Improvement Scotland and from the minister, indicate that normal practice will be adopted—namely, that a decision will not be taken in Scotland in advance of an announcement by NICE. We would prefer it to be otherwise because of the consequences of the uncertainty. We understand that the Scottish medicines consortium is contributing to the process that NICE is undertaking through NHS Quality Improvement Scotland but that it will not make any moves or statements in advance of NICE's announcement.
The longer it takes to put people on the medication, the more the chances of its being effective for them decrease. I can assure members that it is effective, and it would be criminal to remove it from the public domain.
The story that you have given us about the possibility of helping people who suffer from Alzheimer's at such a low cost seems quite remarkable. As you said, without that medication, the cost to the family, to the medical profession and to other carers would be quite phenomenal. For the sake of £2.50 a day, prescribing the drug seems a sensible solution. How do clinicians and medical professionals assess individuals and decide whether the drug will be beneficial before they prescribe it?
I do not know how they decide on its effectiveness. I can speak about the drug only on the basis of my own experience. I am a new person since I have been on the drug. Believe me: I was in a terrible state mentally, and my family were in a terrible state having to cope with me. Right at the beginning, when I got the early-onset diagnosis, I did not know what day of the week it was or where I was. I was frightened to go out, but the drug has restored my self-confidence as well as everything else. I could go on and on about it for hour after hour. The drug has got to stay or, somewhere, some day, people will have to answer as to why it was not kept.
I appreciate and understand that. In your paperwork and in your presentation to us, four or five drugs are mentioned. I would like to know how a clinician decides which one would be most beneficial to an individual. Is it just a case of trial and error?
I believe that it has to be trial and error. When I first got the medication, my doctor said, "We'll try you on this." I went to the southern general in Glasgow; that is where I was diagnosed as having early-onset Alzheimer's disease. Since I went on to the drug, I have had no bad effects from it, only beneficial effects.
The figures that were given in answer to a parliamentary question from Margaret Ewing in January 2004 may partly answer the member's question. They indicated that the most commonly used medication is the one that David Turner benefits from—Aricept, or donepezil. In 2002—the most recent period for which statistics were available at the time—some 19,000 people in Scotland were prescribed donepezil, or Aricept. The other two drugs in the same class of medication—rivastigmine and galantamine—were prescribed for about 10,000 people in Scotland. Another drug, which operates differently and has the potential to benefit other forms of dementia and also to be effective at later stages of Alzheimer's, had only just appeared on the market and is still not recommended for prescription in Scotland. However, at the end of 2002, 100 people in Scotland were on memantine, or Ebixa. To some extent, the figures indicate the nature of the judgments that doctors make, and Aricept is the most common prescription.
Even if the list of drugs were approved by the national health service or whatever governing body approves medications for Scotland, the decision to use them rests with individual health boards. That seems a bit remiss. I would have thought that, if a medication was approved for general use, every health board in Scotland would be obliged or encouraged to use it.
I cannot comment in detail on that. The practice of individual medical practitioners varies. Some of them are very enthusiastic. We have met several who prescribe medication in almost every instance and others who are more wary. I cannot comment on the extent to which economic decision making enters into the picture. It is very much a matter of medical practitioners making the decision unless, as in NHS Lothian, there is some constraint on the budget that restricts and modifies their clinical judgment.
I ask members for recommendations on what we should do with the petition.
I suggest that we write to NICE, asking for an update on the progress that has been made on the appraisal of donepezil, rivastigmine, galantamine and memantine and the treatment of the disease. The petitioners have given us a good case for getting sound reasons from NICE for what it is doing and why it is doing so, and for seeing whether it will change its mind.
Do members agree that that is a good starting point?
I agree. I would like to pick up a point that John Farquhar Munro made. The papers mention the fact that it is not mandatory to take on board the recommendations of NICE or its Scottish equivalent. I wonder whether it would be helpful to write to NHS boards, to see how many of them prescribe the drugs.
I am not opposed to that idea; however, I think that it would be worth waiting until we get the information from NICE. Then we will know what questions to ask the NHS boards. If we know what NICE's recommendations are, we will have a starting point from which to approach the Scottish Executive Health Department or the individual NHS boards to get their decisions. I am not ruling your suggestion out, but I think that we should wait until we have got our first reply.
Mr Bryers mentioned a paper from Alzheimer Scotland. Could we be furnished with that paper, in the meantime?
One of your colleagues, Irene Oldfather, convened a cross-party group on issues relating to dementia and Alzheimer's just 10 days ago. A briefing consisting of three papers was prepared for that meeting, which was attended by 10 or 12 MSPs. We would be happy to furnish the clerk with a full set of those papers.
That would be helpful. We can discuss the petition further when we get a reply from NICE.
I went to that meeting. A short-term working group has been set up to tackle the issue.
We will keep the petitioner updated on any replies that we receive and will decide what further action to take on the petition when we receive NICE's response.
Thank you for hearing us.
Institutional Child Abuse (PE888)
Petition PE888, by Chris Daly, calls on the Scottish Parliament to urge the Scottish Executive, in the interests of those who have suffered institutional child abuse, to reform Court of Session rules to allow fast-track court hearings in personal injury cases; to review the implementation of the Prescription and Limitation (Scotland) Act 1973; and to implement the recommendations of the Law Commission's report on the limitation of actions. Chris Daly, who is accompanied by Alan Draper, will make a brief statement to the committee in support of his petition, after which we will discuss its contents.
I thank the committee for inviting us to today's meeting.
Thank you. You referred to the fast-tracking procedures that were introduced for asbestosis and mesothelioma cases. My understanding is that that fast-tracking system was introduced because of a petition that was lodged with the Scottish Parliament.
That is right.
Previously, there was a timescale problem, in that the cases of some who were diagnosed with mesothelioma or lung diseases caused by asbestos did not get to court because the person died before that stage. I do not mean to diminish the situation of someone who has been abused in an institution, but is there a similar timescale problem for such cases?
I understand that many people with the industrial illness asbestosis died before their cases could be brought to court. However, mortality levels for sufferers of institutional child abuse are also high, although perhaps not as high as in the case of asbestosis sufferers. For example, eight clients involved in civil actions have died in the past year. People in some test cases are filling the shoes of people from previous test cases who died while waiting for the cases to be brought to court. The effects of abuse increase mortality levels among survivors.
Were the people who died in such cases elderly?
No, they were relatively young. For example, in one case the person was in their 50s. Abuse survivors have a decreased life expectancy.
I understand.
It is a devastating point that child abuse causes reduced life expectancy. Are there clinical studies to back that up, or have you given an anecdotal analysis of a situation of which you are personally aware?
Alan Draper can come in on that.
A number of clinical studies from the United Kingdom and elsewhere show clearly the impact of in-care abuse on children who spent long periods in institutional care and who probably also came from disruptive family backgrounds. They have problems with self-esteem and creating relationships, and those who suffered abuse that persisted over many years often feel that life has no meaning. Many of them maintain the hope that somehow their particular situation will receive justice. However, the delays that they feel the process creates—sadly, there are delays after delays—leads them to commit suicide rather than try to cope with the difficulties of life. They say, "Nobody is really interested in us."
Are the courts generally sympathetic to overriding the time bar?
The limitation is applied severely. Section 17 of the Prescription and Limitation (Scotland) Act 1973 contains a delayed discovery rule that extends the basic three-year period until it would have been reasonably practicable in all the circumstances for a person to become aware of the relevant facts; for example, if the injuries in question were sufficiently serious to result in an action.
That strengthens your case.
Like most members of the committee—indeed, like most MSPs—I have had representations from individuals on this issue. Alan Draper is absolutely right: because it was debated in the chamber in December 2004, people have been expecting more from the Parliament and have expected the matter to receive closure.
I think that the age range of INCAS members is from mid-30s to late 50s.
Our oldest member is 96; he was abused in 1919. He is not taking any action on that abuse; he merely wants to support the group in its work. I was speaking to him only yesterday, although he is a man in failing health. Abuse goes back generations. However, most of our members are in their 40s, 50s and 60s.
The age range is much greater than I expected; most of those who contacted me were between 50 and 60.
Some cases were brought as far back as the late 80s, and the people involved still have not had closure. Those cases have been going on for years and years, and therefore consideration should be given to fast tracking them. We could come and go on that, but we are not talking about many years; cases should be dealt with within a year or two.
We feel at the moment that no sooner do we get over one hurdle than we come to another. We are still knocking down hurdles; we are nowhere near fast tracking. Lady Paton recently gave a judgment in the Court of Session on abuse at the De La Salle order's schools. Her judgment clearly indicated that the issue of a time bar should be looked at. However, the advice that we have received from our lawyers is that that could take four to five years. People cannot wait that long; the issues need to be dealt with now.
I absolutely agree with your analysis. Although fast tracking is desirable, I think that it comes further down the line. There are differences between what happens with the asbestosis victims and your cases.
In 2001, the Law Commission issued a report on the limitation of actions. The Association of Child Abuse Lawyers, which is waging a campaign, politically and through the media, is wondering why the legislation that was recommended in that report has not been brought into force. The Law Commission in England, which produced the report, works hand in glove with the Scottish Law Commission. Both commissions have made recommendations in relation to the time limitation issue that are not being taken up by the Government.
We should be asking questions of the Scottish Law Commission. When does it hope to produce its paper? We should certainly remind it of the existing recommendation on legislation.
Was the Law Commission report a United Kingdom report or an England and Wales report?
It was not a UK report. I believe that it was a report for England. However, as I said, the Law Commission in England works hand in glove with the Scottish Law Commission and the report would apply equally to Scotland.
I was just trying to establish where the reports that have been released so far came from.
I speak in support of the petition. Alan Draper thanked the committee for the work that was done leading up to last December, but I would like to pay tribute to him and to Chris Daly for the incredible amount of work that they have done. I know that they have lives to get on with and families and I think that their attempt to get justice has been incredible.
It takes many years, from when they approach the solicitor to when they report criminal activities to the police.
Obviously, the process, which involves going through all the details of the case, has a detrimental effect on people. I know how difficult and painful that is. Can you give me any anecdotal stories about how someone feels when they open up, tell their stories and go through the waiting period? What does that do to them?
Some people do not grasp the fact that the process is long and drawn out. It can be extremely frustrating. Many of the survivors have issues with drugs or alcohol—they are knock-on effects of the abuse—which also devastate their lives. That will obviously have an effect in the family home if the individual is married. Survivors find it difficult to form relationships anyway. As I said, abuse devastates people's lives.
So having a speedy process and getting justice meted out will form part of the healing process, as Mr Peacock said.
There is a huge inconsistency with cases south of the border. There have been many cases there where there has been closure, including that of the Bryn Alyn children's home. There have been various claims against Leicestershire County Council and Flintshire County Council. The cases in England and Wales have produced favourable results for claimants. They have seen justice. Here in Scotland, we are lagging behind.
We have been speaking about closure, which is a complex area in itself. Survivors often want representatives from the institution or organisation that they view as being responsible for what took place to sit down with them and say sorry. That does not just mean a public pronouncement. They should sit down and ask survivors how they can help them and how they can resolve the situation. Closure is not just about achieving justice; reconciliation afterwards is also necessary. A victim wants a degree of reconciliation and understanding. We have written to many organisations, seeking to discuss things with them. We have received varying responses—I will put it that way.
Can you give us some idea of the scale of the problem? How many cases are awaiting resolution—at least, how many is INCAS is aware of? I am looking for a rough answer only.
There are certainly hundreds.
Yes, there are hundreds of civil actions. There are also other people who are involved in INCAS who have not brought civil actions.
Can you be more specific? Is the number of cases 100, 300 or much higher?
One of the lawyers involved has 600 cases.
Six hundred?
Yes.
That is just one of the lawyers involved.
Do members have any recommendations on what we should do with the petition?
Perhaps we could write to the Scottish Executive and ask for an update on the issues that have been raised in the petition.
I recognise exactly why you have raised that point. However, we have not yet closed PE535, the original petition. Under our consideration of that petition, we are still having discussions with various organisations on the matter of apologies from the institutions concerned. That is still on the table.
Okay.
I would like to add that we are working closely with representatives of the Executive, and we have been addressing those issues. We are very grateful for the co-operation from the Executive in that regard.
Shall we write to the Executive on the matter?
I suggest that we also write to the Scottish Law Commission and inquire about the timetable for its public consultation on limitation.
Are members happy with that?
When we get responses from the Executive and the Scottish Law Commission, we will let the petitioner know and we will discuss the matter further then. We will keep him updated.
Thank you for your time.
Common Good Assets (PE875)
Our third new petition is PE875, from Mary E Mackenzie, which calls on the Scottish Parliament to urge the Scottish Executive to ensure that all moveable and heritable common good assets throughout Scotland are properly recorded, audited and insured, and to introduce legislation to ensure that such assets are properly safeguarded. Before being formally lodged, the petition was hosted on the e-petitions website where, from 29 August 2005 to 26 September 2005, it gathered 122 signatures. The usual e-petition briefing has been circulated to members.
First, I congratulate my constituent, Ms Mackenzie, who has been tenacious in relation to the issue. At first sight, it appears to be a strange matter to bring to the committee's attention, but I am a self-confessed anorak about it. I began to find it terribly interesting when it came to light in the Borders, in particular when—strangely enough—bus services were withdrawn in Peebles and the common good fund was used to subsidise the bus service. Suddenly, people began to get interested in what a common good fund is. There was a recent case in Edinburgh in which rather expensive chairs, which were found in an antique shop, had apparently come from City of Edinburgh Council offices. They had the logo and the designation of the council on them. It is interesting that there are historical and valuable artefacts out there in common good funds throughout Scotland that are not auditable or are not listed in any way. It is a similar case with land, and with revenues.
I am interested to hear what members have to say as well.
When I was a member of Renfrewshire Council, the issue of the common good fund was raised constantly, particularly by the good residents in the old burgh of Renfrew. Other councils up and down the country have common good funds; some of them are maintained well, while some are not maintained as well. As Christine Grahame said, the petition may be small and innocuous looking, but it has wider implications. It is good that the matter has been raised in the committee, because the common good fund exists for the common good of the people and unfortunately some councils—as residents will say—do not use it properly. I would like to get the views of the Convention of Scottish Local Authorities on the common good fund, because councils administrate it. Christine Grahame mentioned chairs; I had not heard about that before, but perhaps such things go on and Historic Scotland could comment. Perhaps it would even be worth asking the Accounts Commission for its view.
The petition raises an interesting and valid point. I had assumed that each local authority would have its own register of the heritable and moveable assets in its common good fund, but if they do not it does not seem unreasonable that perhaps they might. It is the sort of thing that would have to be done on an authority-by-authority basis. Although the idea has been sprung on us, so to speak, the subject is worthy of a members' business debate; that would be one way in which to explore the views of members of the Parliament on the subject.
The issue is important to people in Inverkeithing, too, because Fife Council has disposed of property there. It emerges that any investigation into whether the disposal of a common good asset is legal or communally approved requires to be done through the courts. At the heart of PE875 is the point that good, accurate and up-to-date council records should be made publicly available for scrutiny. I support any approach that would result in our making representations in the way that is outlined in the paper.
I do not want to be in danger of widening the discussion—
But you will do so anyway.
Yes.
Under the Freedom of Information (Scotland) Act 2002, a local authority or health board could be questioned about their assets and they would be under a statutory obligation to supply the information. At any rate, it would be good practice for them to put in place such a register.
Miss Mackenzie was one step ahead of you; she used FOI to get the information about common good assets. What John Scott said about FOI is right; all the information should be amalgamated.
I am happy to widen out the subject in the way that Jackie Baillie suggested. The subject of PE875 does not restrict the debate solely to local authority assets; the petition concerns all common good assets, heritable and moveable, the definition of which can be as wide as someone wants to make it.
And the Registers of Scotland.
And the Scottish Executive. Whom should we write to at the Executive? Do we need to write to each department?
Two ministers have an interest in the subject: Tom McCabe, given the local authority involvement, and Andy Kerr, the Minister for Health and Community Care.
Perhaps we should also write to the Minister for Communities.
I suggest that we write to at least one minister and ask them to take comments across the Executive.
It is probably best that we write to Tom McCabe. Are members agreed?
At some point, the issue will become subject to a point of law. Is Tom McCabe the correct minister? Should we not write to Cathy Jamieson?
Given that finance matters are involved, Tom McCabe would seem to be a good starting point. If we were to take a scattergun approach, we might not get anywhere.
I am not suggesting that we write to all three.
Jackie Baillie suggested that we ask the minister to approach all other ministers. We would therefore get their feedback in the response from the lead minister.
We will make that suggestion and say that that is the way in which we hope the Executive will progress the matter. Are members agreed?
You mentioned a number of bodies, convener. To whom will the committee write?
We are writing to Audit Scotland, Historic Scotland, COSLA, the Accounts Commission, the Registers of Scotland and Tom McCabe at the Scottish Executive.
Thank you.
Is that agreed?
Criminal Law (Sexual Offences) (PE885)
Petition PE885, which was submitted by Mark McCabe, calls on the Scottish Parliament to amend Scots criminal law relating to sexual offences to create a statutory offence of male rape in line with the rest of the United Kingdom and Ireland and to ensure that no offences may be committed exclusively by gay men and that all sexual offences apply equally to everyone, whether man or woman, gay or straight. Before being formally lodged, the petition was hosted on the e-petitions website where, from 2 August 2005 to 30 September 2005, it gathered 68 signatures. The usual e-petition briefing has been circulated. Do members have views?
I understand that the Scottish Executive has asked the Scottish Law Commission to consider a comprehensive review of the law in relation to rape and other sexual offences. I think that a discussion paper will emerge towards the end of this year, with a view to publication of a report in 2007. Given that the scope of that review is likely to cover the subject that the petitioner talks about, it would be useful if we were to write to the Scottish Law Commission and the Scottish Executive for an update.
I am happy with that.
Jackie Baillie is right. The petition is interesting. I had not realised that inequalities existed in sex crimes, not just here but in England and Wales. I am glad that the Scottish Law Commission is considering the issue and I hope that section 61 of the proposed draft criminal code will change the law. I agree with Jackie Baillie's suggestion. We should ask for feedback and keep the petition alive.
Are we happy to do that?
New Towns (PE887)
Petition PE887, which was submitted by the Rev Neil MacKinnon, calls on the Scottish Parliament to urge the Scottish Executive to review the long-term planning, social, economic and transportation issues that relate to the creation of new towns, such as Cumbernauld. Before being formally lodged, the petition was hosted on the e-petitions website where, from 4 July 2005 to 23 September 2005, it gathered 424 signatures. The usual e-petition briefing has been circulated.
I will not say whether I agree or disagree with the petition. Unfortunately, Cumbernauld has won not very good awards. We need to have the views of North Lanarkshire Council, Architecture and Design Scotland, the Royal Incorporation of Architects in Scotland, the Royal Town Planning Institute and the Scottish Executive.
We will ask for general views on such issues. The petition is about Cumbernauld town centre, but we must couch our request in terms of seeking information about town centres in general. A new planning policy on town centres was announced recently, so it would be useful for the petition to be addressed in the context of the wider issues. Sandra White's suggestion would give us that scope in considering responses. Are members happy to do that?
That was the last of our new petitions.
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Current Petitions